Archive for the 'Patient decision aids' Category

11
May
10

another volley in the healthcare revolution

The Washington Post is reporting today that a company called Pathway Genomics on is going to start selling through Walgreen’s 6,000 drugstores an over-the-counter kit for testing certain genetic traits.

Beginning Friday, shoppers in search of toothpaste, deodorant and laxatives at more than 6,000 drugstores across the nation will be able to pick up something new: a test to scan their genes for a propensity for Alzheimer’s disease, breast cancer, diabetes and other ailments

The test also claims to offer a window into the chances of becoming obese, developing psoriasis and going blind. For those thinking of starting a family, it could alert them to their risk of having a baby with cystic fibrosis, Tay-Sachs and other genetic disorders. The test also promises users insights into how caffeine, cholesterol-lowering drugs and blood thinners might affect them.

Yeow, that’s going to set off a firestorm! A couple of years ago when companies like 23andMe began to offer tests to consumers the California and New York public health departments and the FDA tried to shut them down. They issued “cease and desist” orders and threatened to charge them with violating various violations of business practice laws. In fact the kerfuffle has already started.

The Food and Drug Administration questioned Monday whether the test will be sold legally because it does not have the agency’s approval. Critics have said that results will be too vague to provide much useful guidance because so little is known about how to interpret genetic markers.

The medical profession is conservative with good reason: lives are at stake. But in all this, in my opinion, is also a component protection of professional prerogatives. Professions in any field don’t give ground to the ordinary person easily.

I’ve had some experience with this. When I started in the cancer field 36 years ago we had two sets of printed literature: one set for the lay public and another for doctors and nurses. You were risking getting fired if you let a cancer patient get hold of the professional literature! The reasons then were the same ones physicians express now about internet information: “they (the public) won’t understand what it means; they will misinterpret it; they’ll suffer anxiety; they might make bad decisions about treatment.” But the internet irreversibly smashed the barrier to access to professional medical information. Doctors are still fighting a rear-guard action and complaining mightily about how it was better in the old days when they were the exclusive source of medical information. I’ve commented on that before.

I’m not dismissing the concerns. No doubt there will unfortunate incidents around these new tests. But what gets me is how unwilling the medical profession is to see the revolution of information that is underway and to rethink the medical paradigm. My pleas is for physicians to start — as a profession — to work on a more equitable and flexible basis with the citizens who want a greater and more equal role in their medical life. We’ll always have a doctor/patient relationship, but I think its going to be much different in the not far distant future.

The internet isn’t going away; instead it’s going to go much, much deeper into our health lives. And genetic tests are not going away either. Like it or not, deep personal knowledge about what lurks in our genes is on the way. Why isn’t the medical profession working with entrepreneurs, patients, futurists, and internet gurus to anticipate what’s coming and do something positive that works for everyone? There’s much, much work to be done, and soon. Without a collaborative movement of innovation and adaptation we’re going to suffer through repeated, time-wasting bouts of friction.

25
Sep
09

Patient decision aids

dr-patientHey, I found out about something I hadn’t heard about before: patient decision aids. It appears to be a movement being developed out of Canada (you know, that awful bastion of socialized medicine) with some participation from the US. Anyway, the idea is to provide patients with a body of information about the situation they’ve been diagnosed with and a process for talking it over with their doctor and reaching a mutually satisfactory decision about what to do. In the context of our current debate about health care reform one outcome welcome by about everyone is curtailing over-treatment.

A white paper from Healthwise, a nonprofit that develops the tools, defines a decision aid this way:

Patient decision aids are tools to help people participate with their doctors in key medical decisions. These aids are useful when there is more than one medically reasonable option to diagnose or treat a health problem—particularly when the options have different costs, risks, or benefits that some people might value differently than others.

This is something I want to keep track of. It sounds like a piece of Health 2.0 And it sounds like an attitude of joint participation between patient and provider that most people these days are looking for.

Oh yeah, here’s an example for herniated disc. Ouch!!




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